Aa
Update on Moi
First off I am sorry I haven't answered emails lately. I have been kind of withdrawn & very tired.
Topotecan was my 3rd drug in 21 months. I did the standard carbo/taxol and than Gemzar & that got me down to 22, but they stopped it because it put me in the hospital from throwing up every time. I still have not gotten a good answer as to why they didn't switch me to Aloxi and finish the treatment. Even after all those times in the hospital, my chemo nurse whom I love, and wouldn't trade for anything, said that they found that Zofran worked best. It works best in general? Well, it sure wasn't working for me. I think they get into a routine or a rut if you will, and they quit thinking outside the box or outside the statistics. I had to make them give me Aloxi with this last chemo.
This Topo was the drug that my onc was hoping would give me a remission finally, but it did not live up to that promise. I finished my 4th round (12th tx) on Tuesday and we won't be doing any more of that. It is not working. My CA125 was 92 when I started in June than it went to 149, down to 147 and now it is up to 192. I know those numbers don't sound high to most of you but they are significant for me. When I was diagnosed it was only 585 and after surgery it went down to 92. With the carbo taxol it got down to 8.5 and I thought I was home free. That of course didn't last and it started to rise immediately.
It is also about the two year anniversary of all this mess starting. I don't know the exact date like some of you do, but I went to my GP on Sept 29, 2006 for what I thought was a hernia and from there it was on to the gyno the next day, (after my GP talked to the gyno on the phone, the gyno cancelled two appts to see me), tests, scans, more tests, more Drs. etc. Surgery for the port implant and the debulking came pretty quickly. I guess I am thinking that no remission in two years and 4 drugs is not a good sign of things to come. How much longer before it gets really bad and uncontrollable, at the rate that I am going through drugs?
I am disappointed that the chemo hasn't worked to get me into remission. I am grateful that the chemo at least keeps it in check, but still, it is a high trade off.
I have another CA on the 29th and a CT on the 30th. My onc will want to put me on Doxil next and I really dread that because the decadron and benadryl are supposed to really help with the "burn" side effect and so I am anticipating that I will have real problems, since I can't take steroids or benadryl and I have very sensitive skin. However, I think I have decided that if the CT doesn't show something, I am not going to have more chemo. It doesn't make sense to me to keep doing this to my body and brain when there is NED and only a CA rise. I guess we will see when that time comes. Right now I am just mentally exhausted. I keep telling myself I will snap out of it, but I am not sure when or if that will happen.
So there is the update. I don't have any big problems like some of you have had. Except for the bladder fistula and some throwing up, I have gotten off easy compared to so many others. I shouldn't complain because I KNOW how lucky I am. That still doesn't make it any easier sometimes.
Topotecan was my 3rd drug in 21 months. I did the standard carbo/taxol and than Gemzar & that got me down to 22, but they stopped it because it put me in the hospital from throwing up every time. I still have not gotten a good answer as to why they didn't switch me to Aloxi and finish the treatment. Even after all those times in the hospital, my chemo nurse whom I love, and wouldn't trade for anything, said that they found that Zofran worked best. It works best in general? Well, it sure wasn't working for me. I think they get into a routine or a rut if you will, and they quit thinking outside the box or outside the statistics. I had to make them give me Aloxi with this last chemo.
This Topo was the drug that my onc was hoping would give me a remission finally, but it did not live up to that promise. I finished my 4th round (12th tx) on Tuesday and we won't be doing any more of that. It is not working. My CA125 was 92 when I started in June than it went to 149, down to 147 and now it is up to 192. I know those numbers don't sound high to most of you but they are significant for me. When I was diagnosed it was only 585 and after surgery it went down to 92. With the carbo taxol it got down to 8.5 and I thought I was home free. That of course didn't last and it started to rise immediately.
It is also about the two year anniversary of all this mess starting. I don't know the exact date like some of you do, but I went to my GP on Sept 29, 2006 for what I thought was a hernia and from there it was on to the gyno the next day, (after my GP talked to the gyno on the phone, the gyno cancelled two appts to see me), tests, scans, more tests, more Drs. etc. Surgery for the port implant and the debulking came pretty quickly. I guess I am thinking that no remission in two years and 4 drugs is not a good sign of things to come. How much longer before it gets really bad and uncontrollable, at the rate that I am going through drugs?
I am disappointed that the chemo hasn't worked to get me into remission. I am grateful that the chemo at least keeps it in check, but still, it is a high trade off.
I have another CA on the 29th and a CT on the 30th. My onc will want to put me on Doxil next and I really dread that because the decadron and benadryl are supposed to really help with the "burn" side effect and so I am anticipating that I will have real problems, since I can't take steroids or benadryl and I have very sensitive skin. However, I think I have decided that if the CT doesn't show something, I am not going to have more chemo. It doesn't make sense to me to keep doing this to my body and brain when there is NED and only a CA rise. I guess we will see when that time comes. Right now I am just mentally exhausted. I keep telling myself I will snap out of it, but I am not sure when or if that will happen.
So there is the update. I don't have any big problems like some of you have had. Except for the bladder fistula and some throwing up, I have gotten off easy compared to so many others. I shouldn't complain because I KNOW how lucky I am. That still doesn't make it any easier sometimes.
Jan,
Thanks for letting us know what is going on. I too have been thinking about you.
And I have to agree with some of the others. I think that I would also ask about having a PET/CT scan. I just had one Fri and am waiting for the results.
I know how hard all of this has been on you, but you are still doing pretty well over all so you cannot give up. I am very close to my 3 year anniversay, with 6 chemo drugs and no remission, so don't lose hope. As you well know that for many of us it is just a matter of keeping it under control. Remission would be a dream come true, but I sometimes wonder about it. If I actually went into remission, it would be awesome, but when it came back, I think it would be harder than it was the first time. When I look at how upset I get at just my CA rising when a chemo stops working, I realize that a recurrence after the joy of remission would be more than I could handle. So think about it, maybe some of what we experience is a blessing in disguise.
Hang in there Hon. You have been through a lot lately, physically and emotionally, and it is understandable that you are just worn out. But you are a h*** of a lot stronger than you are giving yourself credit for.
Love You,
Chris
Thanks for letting us know what is going on. I too have been thinking about you.
And I have to agree with some of the others. I think that I would also ask about having a PET/CT scan. I just had one Fri and am waiting for the results.
I know how hard all of this has been on you, but you are still doing pretty well over all so you cannot give up. I am very close to my 3 year anniversay, with 6 chemo drugs and no remission, so don't lose hope. As you well know that for many of us it is just a matter of keeping it under control. Remission would be a dream come true, but I sometimes wonder about it. If I actually went into remission, it would be awesome, but when it came back, I think it would be harder than it was the first time. When I look at how upset I get at just my CA rising when a chemo stops working, I realize that a recurrence after the joy of remission would be more than I could handle. So think about it, maybe some of what we experience is a blessing in disguise.
Hang in there Hon. You have been through a lot lately, physically and emotionally, and it is understandable that you are just worn out. But you are a h*** of a lot stronger than you are giving yourself credit for.
Love You,
Chris
Hi Jan,
Thank you for the update. I am sorry things are not better and I feel for you since we seem to be in the same boat. Please know you are in my prayers and I will be thinking positive for your results on the CT scan. With love. Deandra
Thank you for the update. I am sorry things are not better and I feel for you since we seem to be in the same boat. Please know you are in my prayers and I will be thinking positive for your results on the CT scan. With love. Deandra
Just look after yourself and rest when you need to , you do a great job of looking out for others . Good luck with the scan, I hope all comes back good.
Take care Love Angie
Take care Love Angie
I agree with you..if nothing shows up on the scan I would stop the chemo. You and your body needs to rebuild itself. The ca-125 is a monster test that really can lead us to the jumping off point at times. Treat based on what is there not the numbers...some of us don't have ca-125 in the normal range anyway. Good luck I hope your test results come back normal and you can have a much deserved break!!(((hugz))~~~Joanne
Dear Friends,
Thank you all for your wonderfully loving support. I really don't know how I would get through this without all of you.
At this point I am just waiting for the CT. I will ask about the PET though also. I am just so very tired these days. I have not done anything for several weeks except read and sleep. I am hoping that my fatique will go away and I will feel like my old self again. I know it is hard and dangerous to make decisions when I am feeling like this, so as I said, I will wait and see what the outcome of the CT is before I make any decisions.
I want to get over to Memphis to spend some time with Donna. I will try and call her later.
You all take care of yourselves & concentrate all of your energies into getting better. I know that is hard with so much going on around us, but we have to make ourselves stronger to continue this awful battle.
Thanks again for all the kind words, good advice and offers of prayer. You all are truly a blessing.
Love,
Jan
Thank you all for your wonderfully loving support. I really don't know how I would get through this without all of you.
At this point I am just waiting for the CT. I will ask about the PET though also. I am just so very tired these days. I have not done anything for several weeks except read and sleep. I am hoping that my fatique will go away and I will feel like my old self again. I know it is hard and dangerous to make decisions when I am feeling like this, so as I said, I will wait and see what the outcome of the CT is before I make any decisions.
I want to get over to Memphis to spend some time with Donna. I will try and call her later.
You all take care of yourselves & concentrate all of your energies into getting better. I know that is hard with so much going on around us, but we have to make ourselves stronger to continue this awful battle.
Thanks again for all the kind words, good advice and offers of prayer. You all are truly a blessing.
Love,
Jan
Dear Jan,
Dear Jan,
Last year I, too, had a rising CA 125 and NED on CT. I asked Dr. Goodman about this and thought her response may be of interest to you, so I have pasted her reply............
--------------------------------------------------------------------------------------------------------------------------------
Dr. Goodman's thoughts: There are no wrong answers. You received the standard of care for chemotherapy for ovarian cancer plus an investigations agent (avastin). You had a great response. Presently, you have no sign of cancer and you feel well. A rising CA 125 is very frightening.
However, there is no evidence that one approach is better than another in this setting. you will see many options. I will list them here:
-wait and watch without therapy right now
-a hormonal agent such as tamoxifen,a rimidex, femara
-avastin alone
-other chemotherapy (Doxil, gemzar, topotecan)
or a laparoscopy to look inside to see what is going on.
While it is most likely that your cancer is growing back but is too small to see on CT scan right now, occasionally a rising CA 125 can be due to other issues such as herbal medicines, liver disorders, cardiac disorders, inflammatory conditions.
I suppose, I would lean towards the femara option and closely see what happens to your CA 125
-------------------------------------------------------------------------------------------------------------------------------
I ended up going on the Femara and taking a 6 month break from chemo. Of course, we each have our own situations...wouldn't it be easier if the choices were black and white?! I'll be praying for wisdom for both you and your doctor as you make your decision. Do take care.
Dear Jan,
Last year I, too, had a rising CA 125 and NED on CT. I asked Dr. Goodman about this and thought her response may be of interest to you, so I have pasted her reply............
--------------------------------------------------------------------------------------------------------------------------------
Dr. Goodman's thoughts: There are no wrong answers. You received the standard of care for chemotherapy for ovarian cancer plus an investigations agent (avastin). You had a great response. Presently, you have no sign of cancer and you feel well. A rising CA 125 is very frightening.
However, there is no evidence that one approach is better than another in this setting. you will see many options. I will list them here:
-wait and watch without therapy right now
-a hormonal agent such as tamoxifen,a rimidex, femara
-avastin alone
-other chemotherapy (Doxil, gemzar, topotecan)
or a laparoscopy to look inside to see what is going on.
While it is most likely that your cancer is growing back but is too small to see on CT scan right now, occasionally a rising CA 125 can be due to other issues such as herbal medicines, liver disorders, cardiac disorders, inflammatory conditions.
I suppose, I would lean towards the femara option and closely see what happens to your CA 125
-------------------------------------------------------------------------------------------------------------------------------
I ended up going on the Femara and taking a 6 month break from chemo. Of course, we each have our own situations...wouldn't it be easier if the choices were black and white?! I'll be praying for wisdom for both you and your doctor as you make your decision. Do take care.
Jan .. try for a PET/CT .. it's a combo from 2 different looks. As you know, my CA was 72 last month and I have a 1/2 inch lymph node by my liver that showed on the PET/CT and it is unchanged for 3 months .. so we are watching. I asked my MD if there was a "magic" number when chemo will need to be done and he said no. In the meantime, why not try the tamoxifen .. very easy to take, can't hurt, isn't expensive for insurance. It drove my # down to 20 and now is back up. The MD still wants me to stay on it since he's hoping it's keeping things relatively quiet so I take 10 mg twice a day. Just a thought .. beats hard chemo if it works. RE: Aloxi. One think I've heard is that Aloxi can be more $$ so quite often Zofran is substituted. If Aloxi works for you, please ask for it every time. It was wonderful for me on the initial chemo. One last thought given to me by one the MD's I work for with regards to waiting and watching my lymph node .. he said "IF" the chemo works .. it will work later as well as now and why give up quality of life for the tiny lymph node that might remain stable for ?? months to come. It is stressfull waiting and watching, but I am NOT nauseaus, in pain .. just tired. I do worry about you Jan and pray that a break in the action will give you some peace and renewed strength. Judy
Jan,
Just wanted to let you know that I am thinking of you. I hope the CT comes back with good news and you can take that much needed break. You are always in my prayers,
Colleen
Just wanted to let you know that I am thinking of you. I hope the CT comes back with good news and you can take that much needed break. You are always in my prayers,
Colleen
Jan, I agree with all the good advice on this thread. Your body is an important barometer. I too found Zofran to be a disappointment. Emend is the bomb, Take a peaceful rest and reorganize some priorities. We are all rowing that boat with you. I hope you are wrapped in peace and sunshine as you move ahead ......Barb
Just...thinking of you.
Love...kim
Love...kim
Just a note to say I am thinking of you. I miss you, too! Sending hugs from Minnesota...
Love,
Mary
Love,
Mary
COMMUNITY LEADER
I think many women know in their heart when they need a break from chemo, but are afraid to speak up because "the doctor knows best". I was guilty of that for almost 6 months, and by the time it finally got through my doctor's thick skull, I was in the hospital with lung problems no one could diagnose. Only you know how you're feeling, and if you need a break, take one. Since you can't take Decadron or Benedryl, your body needs a break before Doxil. Might help you get through it a little easier. But, hopefully your scan will turn out okay, and the "next chemo" won't even be an issue at this point. Hope you feel better, and get some rest.
Love,
Gail
Love,
Gail
Hi Jan, thank you for your update. I think it's a good decision to take a break. You need to get some strength back. I just want you to enjoy your days without feeling sick all the time. I pray that your CT comes back good news so you can carry out your plan.
Love ya!
Love ya!
Know that I am praying for you and hoping you have lots of better feeling days ahead. You are one of the many heatbeats that keep this forum going and I miss you. Hope you get through Chattanooga again soon, and let me know if there is anything I can do - I'm not that far away. Love, Chris P
Dear Jan,
I wish we had magic wands don't you?I know you must be so tired and frustrated . I wish I could say something really meaningful and the words just won't come (and that's highly unusual for me LOL).
I will certainly be sending good "vibes" the 29th and 30th . Take care of yourself and get all the rest you can.. You will do what is best for YOU..
Love,
Sandy
I wish we had magic wands don't you?I know you must be so tired and frustrated . I wish I could say something really meaningful and the words just won't come (and that's highly unusual for me LOL).
I will certainly be sending good "vibes" the 29th and 30th . Take care of yourself and get all the rest you can.. You will do what is best for YOU..
Love,
Sandy
My dear Jan, thank you for the update. I have been worried about you. I know you have been frustrated for quite a while and now I understand why. You are tremendously smart and I know that your heart will lead you to the right decisions for you.
Love, Trudie
Love, Trudie
Ditto Marie's comments. And many, many thanks to Ronni and my friend Charlie in California who gave me the name Emend. Let me qualify tho, my gut feels like a knife is going thru for 2 days, better than puking for 2 weeks. Could get more graphic but just want to get us to a comfortable gastrointestinal place!
Love ya,
Sharon
Love ya,
Sharon
I agree about the Aloxi and Emend. Zofran was worth nothing to me. Also agree about the break if the scan is all clear. I am on a break and I don't even have a clean scan.
Love, Marie
Love, Marie
None of us are in a contest on who is the sickest and all of us have the right to complain. Complain away...... Why in the world you could not have @aloxi and emend is beyond me... It makes all the difference in the wordl... maybe with those 2 drugs you could go back to carbo plat....when needed.
I also agree with NED I would take a break...
The only thing you need to think about now is taking care of you..and I understand about ca 125... every month it is a nightmare....I am doing as Dr. Goodman suggested and putting a limit on how high I will let it go without chemo intervention... Maybe that is what you need to do.. Mine was never really really high but that does not mean anything.. I still have stage IV and my highest was 379...
Jan go with your heart and follow it.... You are as always in my prayers, hopes and dreams... Ronni
I also agree with NED I would take a break...
The only thing you need to think about now is taking care of you..and I understand about ca 125... every month it is a nightmare....I am doing as Dr. Goodman suggested and putting a limit on how high I will let it go without chemo intervention... Maybe that is what you need to do.. Mine was never really really high but that does not mean anything.. I still have stage IV and my highest was 379...
Jan go with your heart and follow it.... You are as always in my prayers, hopes and dreams... Ronni
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